‘Beyond the Grasp of Memory’

Loretta Veney’s new book documents her life with her mother, who has dementia.

By Karen Shugart

Doris Woodward no longer remembers her daughter. “She rarely talks at this point,” says Loretta Veney. “She’ll say uh-hmm or yes or thank you, but when people say, ‘Who is this person with you?’ she’ll say, ‘That’s a very nice person.’ That’s my name at the moment—a very nice person.”

The realization hit Veney hard. In the memoir she wrote, “Being My Mom’s Mom: A Journey Through Dementia from a Daughter’s Perspective, Veney recalls dealing with the reality that her mom would someday forget those she loved most.

“It’s a selfish thought,” she writes. “I never want to think that I am forgettable. Yet, when it comes to dementia, everything can be and will be beyond the grasp of memory.”

Veney self-published the book, which she estimates has sold about 7,000 copies, in part because she wanted to tell the story of growing up with her mom in Washington, D.C. She also wanted to address what she felt was a dearth of information on the real-life experiences of caregivers particularly in the African-American community. When she contacted churches to see what support or discussion groups might be available, she found few people wanted to talk about it.

“They’d say, ‘We don’t have that problem here,’” she recalled. “And you know there’s probably two or three people who have it sitting in the front row.”

Starting the Conversation

Since then, Veney said she has sensed a growing openness to discussing dementia. “Being My Mom’s Mom” has been picked up by several assisted-living companies, who offer the book as a resource for families dealing with a loved one’s cognitive decline.

A security consultant, Veney has found a dual career as an author and frequent public speaker, offering humor, guidance and support to a variety of audiences. In Being My Mom’s Mom, Veney lays out with exuberance and warmth suggestions on dealing with the changes brought on by dementia. Chief among her recommendations are patience—how to cultivate, value and preserve it.

When her mother was diagnosed at age 77, there was never any doubt that Veney would be her mom’s caregiver. “My sister had no patience,” she recalled, laughing. “Even as a young kid, I just kind of went with the flow. I’m pretty laid back.”

Learning Self-Talk

Still, the changes in her mom challenged her. Veney learned to do a lot of counting to 10. She began giving herself pep talks before visiting her mom.

“I talk to myself for a couple of minutes. ‘This week, don’t let that get to you,’” she will tell herself.

Particularly challenging were the questions her mom would ask over and over, having forgotten Veney had answered that very question just seconds prior. “Do I think in my head, ‘Please, God, don’t say that again?’ Yes,” she admitted. Still, she’s proud she hasn’t lost patience with her mom yet.

Inspiring Others

In her book, she described how a stranger had approached her after Veney and her mom had struggled in a cashier’s line—Woodward was asking questions over and over, and Veney was answering gamely.

“The woman was in tears and told me that she had learned so much from me observing the two of us, and that she was going to try and be more patient and loving with her own mother,” Veney wrote. “It gladdened my heart to know that Mom and I could be an inspiration to someone else’s family also struggling with this disease.”

These days, her mom’s words are few. Not many activities attract her interest. But Woodward still enjoys visiting McDonald’s—a restaurant she never enjoyed before her diagnosis. Once, when Veney told her she could have an apple pie only after she ate her salad, Woodward told the cashier, “We’ve switched roles. I used to be her mom, and now she’s mine.”

She also still enjoys playing with Legos. “The Legos are now the only connection I have with my mother,” Veney said. “Her eyes light up, and it’s like she comes back. Somewhere in there, she remembers that me and her spent hours and hours using those Legos. As soon as we finish with them, she goes back to her little blank stare.”

‘Kind of a Blessing’

Veney’s mom will be 88 years old in February. The fading memory that has brought Veney such sorrow has had its bittersweet blessings, she admitted. Veney has never told her mom that her sister, Renee, died from multiple sclerosis complications. Nor has she told her mom that Veney’s husband, Tim, died unexpectedly in July after a series of strokes.

“I’m happy, frankly, that my mother doesn’t remember him or me,” she said. “She would just have a fit. She worshipped him! In some respects, it is kind of a blessing.”

It’s also a heart-rending curse. When her husband’s death stunned her, Veney needed maternal comfort. After years of seeing her mom nearly every day, for the next week she couldn’t bring herself to visit.

“I really needed my mother to give me a hug and say, ‘It’s going to be ok,’” she said. “I couldn’t deal with losing him and going to see her, and her not able to help me.”